Creating Your Lymphedema Treatment Plan

Just as breast cancer treatment introduced a “new normal” into your life, so too will lymphedema treatment. Whether it means learning how to wear a compression sleeve or bandage your arm, or seeing your lymphedema therapist every day for several weeks, you’ll find that lymphedema can bring some new disruptions into your life. It’s normal to feel angry, frustrated, or just disappointed that you have a new condition to deal with after all you’ve been through. If your arm or hand is visibly swollen, you may find yourself on the receiving end of questions from friends, colleagues, and even strangers! Many women say that a swollen limb is a daily reminder of the breast cancer — and that can be hard to deal with.

You may find it helpful to network with others who’ve been diagnosed to get emotional support and exchange ideas. You can check out Breastcancer.org’s Discussion Board on Lymphedema, or talk to your lymphedema therapist about other support groups or services in your area. As you talk to others, though, try to remember that everyone’s situation is unique — and any advice they’re getting may not apply in your case.

The following questions may be helpful when you sit down with your lymphedema therapist to make your treatment plan.

1. How severe is your lymphedema?

If you have stage 2 lymphedema (or stage 3, but it’s rare), complete decongestive therapy (CDT), is considered the “gold standard” of lymphedema treatment. CDT involves daily sessions with a lymphedema therapist and daily bandaging of the arm, trunk, or other body part for several weeks, followed by action steps you take to keep the condition under control, such as wearing a compression sleeve and doing exercises.

If you have stage 1 lymphedema, your therapist also may recommend CDT. Or, in cases of very mild stage 1 or stage 0 lymphedema, he or she may prescribe specific treatments such as wearing compression sleeves and doing special exercises, but not the full CDT regimen. “There is evidence that milder cases can be managed with less than CDT,” says Nicole Stout, MPT, CLT-LANA, Senior Rehabilitative Services Practice Leader at Kaiser Permanente, Mid Atlantic Region. “We need to stratify treatment based on severity of the lymphedema.” You and your lymphedema therapist can work together to figure out which combination of treatments is right for you.

2. Are there triggers for your lymphedema?

Some people only experience lymphedema symptoms when it’s hot outside, when they’re using the arm more than usual, when they’re exercising — or in any other “riskier” situation that increases the body’s production of lymph. If this is true for you, your treatment plan will need to account for that.

3. Is cost a concern?

Lymphedema treatments are not always covered completely by insurance plans. If cost is a concern, then you may want to find out what’s covered before making your treatment plan. Your lymphedema therapist should be able to help. If your plan doesn’t cover regular visits to a therapist, do your best to make as many visits as you can afford, or at least have an initial consultation. Right now, a bill known as the Lymphedema Treatment Act is under consideration by Congress. The bill would require Medicare to cover all treatments for lymphedema, and if passed, other insurance companies would likely follow suit. Stay tuned.

4. Are scheduling and/or transportation a challenge for you?

If complete decongestive therapy is recommended, keep in mind that it will involve daily visits with your therapist for at least a few weeks and maybe more. While this is a major commitment, it’s in your best interest to find a way to make time for it. Being aggressive with treatment on the front end can make a major difference in the long run. However, some people find they just can’t do it, whether because of job or home responsibilities or lack of reliable transportation. Work with your therapist to come up with a plan you can stick with, advises Nicole Stout. “There is a lot of road between doing nothing and the full standard of care. Something is better than nothing in every case, and a plan can always be adapted to meet an individual patient’s needs,” she says.

5. How actively have you been using your arm, hand, and upper body?

Exercise is an important part of the treatment plan. But you need to take it slowly, working up very gradually to your previous level of activity, and supervision from a certified lymphedema therapist is highly recommended at first. You and your lymphedema therapist should develop a program that’s safe for you.

6. What are your goals for treatment?

Some people are willing to do whatever it takes to get their arm or hand (or other body part) back down to normal size and keep it there — even if it means they have to put on bandages and/or compression garments day and night and make other changes in their daily routine. Others are OK with having some mild swelling if it means they don’t have to be wearing something all of the time, doing daily exercises, etc. Think about your own goals for treatment and discuss them with your therapist. Do you want to be as aggressive as possible, even if this requires more time and energy on your part? Or would you rather do what’s necessary to control the lymphedema, but nothing more — realizing that you may have visible symptoms such as swelling? Keep in mind that doing less than your therapist recommends also means accepting the risk that the lymphedema could get worse, or lead to complications such as infection. These are important points to discuss.